longterm effects of jaundice and possible brain damage

[mayflowers9]

I was hoping to get info from someone with experience of severe neonatal jaundice. I have raised my concerns with my GP and we are on the waitlist to see a paediatrician, but that will take at least a few months and I am finding it difficult not to worry.

DS developed severe jaundice after a ventouse delivery, which was exacerbated by lack of milk intake, as my breastmilk hadn't come in and I (stupidly) didn't think I would need to pack formula in my hospital bag as I was planning to EBF. We were having difficulty with feeding and he was screaming and screaming all night with the most heartwrenching cry – I think this was night two after he was born. We did supplement with formula on his first night and I had some colostrum coming in, but by night two there was no formula left. A midwife was trying to help me and he did eventually fall asleep. In the morning, I raised an alarm as I wasn't able to rouse him and they took his bilirubin levels. He was just below the transfusion line and spent two days under the lights in our hospital room.

We were discharged and the hospital didn't raise any concerns. Now, at 2.5, DS has a speech delay and is on the waitlist for an ASD assessment. His private hearing test came back fine (with some mild glue ear in one ear) and we have a follow up in August, where I will ask about the possibility of hearing loss resulting from jaundice. I understand that ASD and kernicterus are two different diagnoses, but I feel very uneasy about that night in the hospital and wonder if DS could have sustained brain damage that wasn't immediately obvious. Is this possible with kernicterus, or would the effects be more apparent? Could a speech/intellectual delay come from kernicterus if we have no concerns about physical development or movement disorders?

Sorry that this message is so long! If you do have any input, thank you so much in advance.

What did they say to you at the time about his severe jaundice? What were his numbers?

Thanks for your reply. I requested his medical report but there is no record of his numbers and nothing in his red book. I will ask the hospital if they have a record that wasn't passed onto my GP. At the time, they said that he is just below the line of needing to be admitted into the NICU, so they will start immediate phototherapy in our room and test him regularly. We fed him expressed colostrum and formula every two hours and his levels started coming down. The doctor said that the jaundice could have resulted from his ventouse delivery. I remember the medical team seemed concerned about bringing his levels down asap, but tried to reassure us that everything will be ok. No one mentioned possible brain damage at the time.

@mayflowers9did your son have kernicterus? Was it confirmed? It’s apparently the kernicterus that can cause brain damage.

My baby was admitted into NICU for severe jaundice, and similar levels of bilirubin to yours (they prepped for a transfusion as he was just above that line, but he responded to the blue lights and so they didn’t go ahead). He didn’t have kernicterus they didn’t think (no seizures or stiffness in the muscles). However we were forwarded to a neurologist for regular checks afterwards as they couldn’t be sure, and told that there could be developmental delays as a result and links with cerebral palsy and autism. I don’t think he does have these (he is just 3 so it could be too early to tell conclusively) but we also were told fish oil is good. We have done this, I don’t know if it helps, but we do notice a difference in behaviour when we remember to be consistent with it.

It probably hasn’t caused any issues because if he had kernicterus he should have been taken straight to NICU. But I would probably flag it to every medical professional just in case

Also, I just wanted to say, it won’t be anything you did. Ventouse delivery causes bruising, and bruising contributes to jaundice levels. Many people just have colostrum a couple of days in. I didn’t take formula either and many of my friends didn’t also. So please don’t blame yourself. These high levels of bilirubin are inexplicable

Thank you so much for your detailed response. That's wonderful that your son is doing well now.

The hospital didn't mention the possibility of kernicterus, maybe because he was below the transfusion line. What makes me uneasy is the night before – shrill, inconsolable crying, difficult to wake up – and I wonder if he was in the early stages of kernicterus then, before his levels were tested, and some damage did occur before they started treatment. I didn't consider this possibility at all until his developmental delay became apparent. I will follow up with my GP and ask for a referral to a neurologist as well.

to reassure you about not being able to rouse your baby, I had two babies and both had mild jaundice (no phototherapy) but on night one (DS1) and night two (DS2) both were impossible to wake up. First one was a very difficult forceps birth with bruising (after a failed ventouse) and the other was a straightforward birth. What I’m saying is of course get checked if you are worried about it but don’t tie yourself in knots about not being able to wake your baby and whether this was a sign of kernicterus as it can also just be a sleepy baby. I’m no expert, but I would say I wouldn’t expect bilirubin levels to elevate and come DOWN before testing: unless treated they tend to increase. So I wouldn’t think he would have been in kernicterus BEFORE he was tested for the first time. Not an expert and not dismissing your concerns — hoping to reassure instead

I’m so sorry @mayflowers9I remember what a stressful time it was and it seems like support afterwards has really varied. I think if I were you I would flag it up repeatedly to every medical professional, as they probably won’t make the link (if there is a link if your case).

I remember being told by the consultants that bilirubin levels anywhere near the exchange transfusion line were rare and very serious. We had rounds of younger doctors being brought into NICU to see/examine our baby with high levels but no visible signs of kernicterus, because it was so rare (in a busy huge London hospital)

They also emphasised that early therapy and intervention (speech, physio etc) can really help with this type - the earlier the better. I don’t know if you can look at some private speech therapy while you wait? We did do some private physio

Just to mention the levels are different for before 48 hours age and after 48 hours age. Before 48 hours, the levels requiring an exchange transfusion are about 100mm/l less than after 48 hours. It’s a graph that moves up with the baby’s age

thank you for the reassurance

Thanks for this. We have done about ten sessions of private SALT and are pausing for a couple months now, as the therapist wasn't a good fit. DS has always had strong gross and fine motor skills, so we haven't looked into physio. One question I have for the specialist, when we do finally see someone, is if the longterm effects of kernicterus always include physical and motor difficulties. As DS has never presented with these, I would hope that his speech delay is down to inherited ASD or something else. The thought that his difficulties could have been prevented and are down to damage rather than an innate neurological difference is really horrible. I understand that there could be a link between ASD and severe jaundice though, which still isn't fully understood.

That's good to know. He would have been a few hours before 48 hours of age when his levels were tested. I'll be sure to raise that as well.

also just to add that the difference between unresponsive and sleepy, especially in infants with jaundice, is very confusing! thanks again for your response, I appreciate it.

sorry meant to quote here

@mayflowers9I actually think the fact he was tested and treated under 48 hours is really comforting, as it was treated so promptly there really wasn’t a delay. It sounds like you are so on top of it all with the private tests and SALT therapy etc

Thanks for your kind words. That is reassuring.

Hi,
Has anyone suggested the possibility of ANSD to you? It’s a type of deafness that can be caused by jaundice and can only be diagnosed by testing the child’s abr’s. This test has to be done while the patient is asleep so is routinely done for newborns but not older babies/ children. People with ANSD may ‘hear’ sound at normal levels, but can only perceive it as noise. As a result, it can be mistaken for ASD. It might be worth looking into it as ANSD may be treated successfully in the same way as other types of deafness.

Thanks for the suggestion! I did request a hearing test for ANSD and am waiting to hear back. I didn't realise the test had to be done while the patient is asleep. I suppose it would have been missed during DS's hearing test earlier this year.

As a safety measure, the exchange transfusion line is set significantly below the level at which you would expect kernicterus to develop. I have known loads of babies who were over that level, some quite a long way over, who haven’t had any signs of kernicterus. I honestly wouldn’t consider jaundice that didn’t need SCBU admission, and never crossed the exchange line, to be severe. No one can give you a 100 % answer, but it seems pretty unlikely.

Thank you. That’s very reassuring to hear!

I never knew there was a connect to the ventouse and jaundice. My dd was a ventouse delivery and had jaundice ( don’t know the numbers it was 26 years ago and don’t think I was told at the time) thankfully she had no long term complications.

I don't know about the jaundice, but when I had my babies, there were signs all over the ward warning mums of how babies often act in the second night. Google 'second night syndrome' - grumpy inconsolable crying is apparently pretty normal.

I’m not a medical expert and it’s been a long time since I researched it but I believe that ANSD can be caused by jaundice at lower levels than kernerictus. I was also told that it can be a struggle to get a diagnosis with older babies and it can help if you can get referred to a cochlear implant centre as they have better equipment/ expertise. I would say, like any deafness, the quicker you can get diagnosed, the quicker you can start dealing with it. That’s not to say the test will come back positive, but you’ll know for certain as it’s a definitive test. Good luck!

That’s interesting. I remember reading that newborns sleep through the first day and night, so that baby and mom can recover. Definitely not our experience!

I guess by night two they are probably missing the comfort of the womb, and being fed through the umbilical cord

Thank you! That’s good advice. I have raised with the private audiologist we saw earlier, in case they can recommend another clinic for this.